“The availability of drugs for rare diseases still represents a challenging objective, since research and development (R&D) in this field is characterised by many well-known difficulties. This is even more relevant if we consider that a large part of these patients are children, since paediatric trials are more challenging due to methodological, regulatory, ethical and economic reasons….” (Giannuzzi V. et al. 2017).
The field of rare disease is one of the main areas of interest of the Fondazione Gianni Benzi.
The Foundation is member of the European Joint Programme on Rare Diseases (EJP RD) that aims to improve the research on Rare Diseases.
In this framework, an Info Day and Brokerage Event was organised on the 7th November in Istanbul. It was the occasion to stay informed about the upcoming EJP-RD calls, meet potential partners and share innovative ideas.
Annalisa Landi, researcher from Fondazione Gianni Benzi, participated in this event presenting a project proposal focused on the orphan diseases affecting children.
The right to health must be guaranteed to everybody. Nobody must be excluded from the progress of science, especially the vulnerable population, such as the children. For this reason, more efforts should be made for them! Considering that there are few medicines available for children and that the majority of rare diseases affect them, CHILDREN ARE ORPHANS TWICE!
Stay tuned for updates on this proposal!